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Makes me feel like i can start hoping again for my boy.kind of puts a new spring to my step,if i may put it that way.I mean,these are pharmaceutical compounds that are already in use,so its not like like we are re-inventing the wheel,but more like finding a new way to put it to use.The Exxon-skipping approach to dealing with DMD has covered some pretty impressive ground.But this heart failure drug combo seems to put an almost touchable feel to things.

I spoke to my son's cardiologist about this. He was not familiar with the article (yet) but did not think it would change the landscape. Here's why:

* for several years, other studies have shown losartan to have a relatively advantageous effect over lisinopril. There is a trial underway to compare the two based on those studies. That trial is still mostly recruiting stage, and will not complete for at least 5 years (!). Until it finishes, few clinics will make any conclusions.

* This study flies in the face of those earlier results. He suggested that because of this, it will be downplayed by medical community that is already invested in losartan results.

Despite his opinion, I think this line of resesarch deserves real attention! But, I'm skeptical it will actually get any considering how many other trials are underway.

You are feeling the same as me I am having an appointment with our cardiologists so I can know for sure the side effects of an pediatric dose, what I have been reading is totally easy to manage, we are talking about our boys moving around, maybe this is it.

greetings!

JP.

wainaina muiruri said:

Hi,Juan

Makes me feel like i can start hoping again for my boy.kind of puts a new spring to my step,if i may put it that way.I mean,these are pharmaceutical compounds that are already in use,so its not like like we are re-inventing the wheel,but more like finding a new way to put it to use.The Exxon-skipping approach to dealing with DMD has covered some pretty impressive ground.But this heart failure drug combo seems to put an almost touchable feel to things.

My son is in the cardio study you mentioned. He will finish his year of meds next January. Although the results won't be available right away, and they probably are still recruiting participants, I've not been told we have to wait 5 years for the results. Is your cardiologist involved in the study?

Anyway, for those who shy away from clinical trials and studies for any reason, the process is important to get involved with not simply because our sons deserve better treatments (which they do), but because each boy needs to fight his disease in every way possible. When my son is older I have no doubt he and his brother (not dmd) will feel honored to have had this chance not just for us but for all with this disease. David said:

Juan,

I spoke to my son's cardiologist about this. He was not familiar with the article (yet) but did not think it would change the landscape. Here's why:

* for several years, other studies have shown losartan to have a relatively advantageous effect over lisinopril. There is a trial underway to compare the two based on those studies. That trial is still mostly recruiting stage, and will not complete for at least 5 years (!). Until it finishes, few clinics will make any conclusions.

* This study flies in the face of those earlier results. He suggested that because of this, it will be downplayed by medical community that is already invested in losartan results.

Despite his opinion, I think this line of resesarch deserves real attention! But, I'm skeptical it will actually get any considering how many other trials are underway.

There have been so many opinions on every approach that I started to listen to my own internal voice for a long time now, I think from what I read that the mix of both drugs are doing the difference, even though for treating some disorders Losartan could be more effective. It is important what your cardiologist says but in my case I will act fast trying something already approved, the timeline is short for our kids and long for studies, if this study is on the news after some time and it´s giving us a door, I will try to open it.

Please let us know more if you reciev more information.

greetings!

JP.

David said:

Juan,

I spoke to my son's cardiologist about this. He was not familiar with the article (yet) but did not think it would change the landscape. Here's why:

* for several years, other studies have shown losartan to have a relatively advantageous effect over lisinopril. There is a trial underway to compare the two based on those studies. That trial is still mostly recruiting stage, and will not complete for at least 5 years (!). Until it finishes, few clinics will make any conclusions.

* This study flies in the face of those earlier results. He suggested that because of this, it will be downplayed by medical community that is already invested in losartan results.

Despite his opinion, I think this line of resesarch deserves real attention! But, I'm skeptical it will actually get any considering how many other trials are underway.

Cheryl - we tried to get in the study, but were rejected because my son's heart was "too healthy." Ironic! My cardiologist (Dr. Mark Parrish, UC Davis Medical Center) is involved with the study, yes.

Juan - I agree with you entirely, we all must make our own decisions. My boy just turned 13. A bittersweet moment that he is now a teenager and still no treatment or even a study to participate in.

But without a proper study, how would we know the dosage? or dosing regimen? Or potential side-effects that correlate to the effective dosage/regimen? I fear the consequences as much as I fear non-action.

I guess whichever way it pans out,i am sure this is yet another worthwhile reason for us to hold our breath, and say our prayers too.Despite the disappointments that we have experienced as a community this far,it is still great having such a vibrant research community and knowing this dmd thing is being assaulted from all fronts.

No action is no movement for our sons for sure, pediatric dosage as if my kid had heart failure managing any side effect is for me a risk to take, in your case you need a dose as if your son (in between kid and adult) had heart failure.

I will manage it like that so I can try at least the safe dose and see results, God has put us on a place were he wants us to act with faith and faith is action, i´m no priest but I do have faith.

JP.

David said:

Cheryl - we tried to get in the study, but were rejected because my son's heart was "too healthy." Ironic! My cardiologist (Dr. Mark Parrish, UC Davis Medical Center) is involved with the study, yes.

Juan - I agree with you entirely, we all must make our own decisions. My boy just turned 13. A bittersweet moment that he is now a teenager and still no treatment or even a study to participate in.

But without a proper study, how would we know the dosage? or dosing regimen? Or potential side-effects that correlate to the effective dosage/regimen? I fear the consequences as much as I fear non-action.

I guess whichever way it pans out,i am sure this is yet another worthwhile reason for us to hold our breath, and say our prayers too.Despite the disappointments that we have experienced as a community this far,it is still great having such a vibrant research community and knowing this dmd thing is being assaulted from all fronts.

For treatment after heart failure, lisinopril dosing recommendations stop after six weeks.

Treatment of heart attack (myocardial infarction) is started with individual doses of 5 mg followed by 5 mg after 24 hours, 10 mg after 48 hours and then 10 mg daily. Treatment is continued for 6 weeks.

For treatment of high blood pressure, lisinpril dosing is 20-40mg/day, with little improvement of higher doses

The starting dose of lisinopril for treating high blood pressure is 10 mg daily. The usual dose range is 20-40 mg daily. A dose of 80 mg is not much more effective than 40 mg.

Do you know how the dosage given to MDX mice would translate to humans? I didn't find that in the Circulation article, but most of that article is over my head anyway.

I've met Dr Parrish since part of our participation in the study takes place at Davis. We live in SoCal, our son Alex (the one with dmd) is going to be 13 later this month. Happy to hear your son can't qualify for the cardio study!!! My husband and I were hoping to enroll Alex in something...wasn't thinking it would be this study tho :/ where the qualification is having heart involvement. At least we caught it early.

I know there is a preventive dose used for kids starting at 4 years, I talked to the pediatric cardiologist, she uses the combination as preventive with kids here in Lima with very low side effects, that is whta I was loking for , my appointment is tomorrow night , i´ll let you know what she tells me about it.

greetings

JP.

David said:

Juan - I did a bit of research and its still unclear to me how you would move on this independently of a clinical study that replicates the findings on the MDX mouse.

For treatment after heart failure, lisinopril dosing recommendations stop after six weeks.

Treatment of heart attack (myocardial infarction) is started with individual doses of 5 mg followed by 5 mg after 24 hours, 10 mg after 48 hours and then 10 mg daily. Treatment is continued for 6 weeks.

For treatment of high blood pressure, lisinpril dosing is 20-40mg/day, with little improvement of higher doses

The starting dose of lisinopril for treating high blood pressure is 10 mg daily. The usual dose range is 20-40 mg daily. A dose of 80 mg is not much more effective than 40 mg.

Do you know how the dosage given to MDX mice would translate to humans? I didn't find that in the Circulation article, but most of that article is over my head anyway.